Working within the traditional medical system while having a PDA child is stressful. It can be intimidating, frustrating, and triggering for both you and your child. If in the past a doctor or pediatrician has made to feel like it was “your fault” for your child’s behavior, the last thing on earth you want to do is be vulnerable again. We understand that -- due to past experiences -- it can feel completely unsafe to share with a medical professional what is really going on in your household, in your family, or with your child.
Additionally, even if you are open to being vulnerable and communicating honestly with a medical professional, these moments of openness often come at times of acute stress. For example, you may be reaching out to a medical expert because you are considering starting medication for your child for the first time or because you need support and documentation to advocate for accommodations at his school. This type of situation is stressful, and unfortunately, it is when most people are least able to think rationally. Based on the fact that you are vulnerable and tired, we wanted to offer you some reminders and resources to help you find the right professionals to work with you and your child.
Your child’s doctor should listen to you.
This is a non-negotiable. For me this is more important than a doctor’s academic credentials, published research, or areas of expertise. It doesn’t matter if someone went to Harvard and Yale, if they are going to tune you out, check the boxes on a form, and send you on your merry way. This principle is especially important when looking for medical support with a PDA child, because there are no boxes for these children yet. The diagnostic category doesn’t exist in the U.S., so doctors will need to learn from the empirical reality in front of them (your child!), rather than depending on academic and research-based information that already exists or fits into their comfort zone.
While living in the D.C.-area, I had some pretty dismal experiences when our family worked with pediatricians who were supposedly “the best” in the area. Despite their reputations – likely based on their work with neuro-typical children – they did not serve my son or our family in a way that was helpful or improved our understanding of Cooper’s developmental challenges. For example, when I brought up concerns about Cooper’s lack of self-regulation, they brushed me off and told me he would grow out of it. When he turned four and it persisted as a concern, they gave my husband information with a link to a support group for parents of “difficult” children. When at two-and-a-half years old I expressed our concerns about his eating issues, they made me feel like it was my fault. One pediatrician cited research on the importance of family dinners and explained that Cooper’s eating challenges were likely because I worked full time and wasn’t home to establish a home-cooked family meal each night (!). She then explained that she has three children at home, yet manages to get a home cooked meal on the table every night. This was her response to my concern that my son gagged often and that he potentially wasn’t getting enough calories. No one referred me to a specialist, no one explored sensory issues with me, no one gave me information about a developmental pediatrician.
This is simply not acceptable.
You have the right to work with doctors who will take your challenges seriously and listen to what you have to say. In the case that your concerns about your child are spilling outside of a doctor’s area of expertise, it is the doctor's responsibility to explore the idea of reaching out to a colleague or a specialist who does have more expertise in that area. There should be conversation, options, exploration. Additionally – and this is a key point – your doctor does not have to “believe” that Pathological Demand Avoidance should be its own stand-alone diagnostic category, however they must believe the challenges you are facing are real. It is imperative that regardless of current diagnostic categories, they will listen to your descriptions of your child and respect the PDA-friendly strategies you are using, if you tell them that they have helped your child.
You are allowed to change doctors.
If your doctor or therapist is unwilling to listen to you or believe the reality you are explaining, you are absolutely in your right as a parent to find one who is. I learned this lesson the hard way, but it has paid off. When we moved from D.C. to Michigan, I interviewed pediatricians before choosing one. I had a rule -- if they weren’t willing to have a phone conversation with me about my child before we showed up in their office -- they were immediately filtered out. Now I have a pediatrician who has helped me navigate IEP advocacy, insurance coverage with occupational therapy, and has listened to my concerns about whether my younger son, William, also has sensory issues. This doctor views us as a family system. Although he isn’t a PDA expert – or even an Autism expert – he listens, he learns, and he respects the reality of what we deal with.
In general, when you are searching for a new practitioner, it might be useful to do a “litmus” test, by asking them to first talk to you about your child’s reality and PDA. Caitie has used this approach successfully, and used a letter format to gauge a doctor's ability to listen and take PDA-related nuances seriously. If you would like to use this approach, please feel free to use her template letter that you can send to a new doctor or therapist to set the stage before you even walk into the room. (The letter is attached below).
You are allowed to say “No, thanks.”
Even in the case that you have found a pediatrician or a therapist you love and that is willing to support you, you are still allowed to respectfully say "No, thanks” to something they suggest. For example, our family saw a wonderful clinical psychologist who specializes in “atypical” presentations of Autism here in Michigan. He suggested that I do a parent-coaching with a specialist as part of the PLAY project in Ann Arbor. Although I trusted him and felt like he was offering this as a suggestion in good faith, I declined to do the therapy for a few reasons. First and foremost, the parent “coach” was not a specialist in Pathological Demand Avoidance, and had never heard of it, so I didn’t feel like she was coming at it from the right angle. Additionally, I was at a point where I didn’t want any more “coaching.” Rather, I wanted to find someone who would work directly with my child. Finally, it was too expensive for what I would get out of it. In other words, “the juice wasn’t worth the squeeze.”
Similarly, our family just completed eight months of home-based neurofeedback with a wonderful chiropractor in Michigan. Before we began the therapy in our home, I had to drive almost two hours with Cooper to his office to do a “brain map” so we could see whether and where there was abnormal brain activity. It was a very intense, challenging day, and getting him there was a struggle. My son’s anxiety was surging, and I had to use ipads, pacifiers, McDonald’s fries and candy to help him through it. The most difficult part was helping him through the 10-minute brain map, which in reality took over an hour to record his brain activity because of Cooper’s constant movement and urge to flee the room. I had to hold his hand, and tell him his birth story over and over, just to get his body calm enough to get the brain reading.
This was something I did because the return on investment was huge. As a result of getting him to the office a single time, we were able to do the neurofeedback training in our home, on our own computer, and through a PDA-lens, which allowed Cooper to enjoy it. However, when the doctor recently asked that we come back to his office for another brain map to see whether his brain activity looks different after all that therapy, I simply said “no, thanks.” At this point, it is not worth it. We completed the therapy, I have noticed positive changes in my son’s focus and executive functioning, and it doesn’t really matter to me what the brain map shows. It is too much of a demand to get him back on the road for a four-hour round trip visit, to make him sit still in a chair, and to raise his anxiety to that degree. The return investment is too low, so I said “No, thanks” and that’s fine.
You should feel completely comfortable and in your rights to choose to follow or not follow recommendations from a doctor if they do not feel like they would be PDA-friendly or work through the PDA lens. You don’t owe it to the doctor to be an "easy" patient, you owe it to yourself and your child to ground down into what you know is best. You have a right to make rational, cost-benefit analyses according to your energy levels, finances, your child’s anxiety threshold, and your time.
You are allowed to ask for reasonable accommodations for your child.
Most hospitals, medical practices, and therapist offices will offer a statement on inclusivity and their policy on accommodating disability. For example, it might look like this. It is helpful to review this as a reminder that you absolutely have the right to ask for help if you are having trouble getting your child to an appointment because of demand-resistance. While reviewing some materials about accessibility on this Autistic Self-Advocacy website, I came across an article about increasing accessibility for the neurodiverse population. I found that the strategy outlined in the white paper was incredibly relevant for parents of a PDA child: “Make sure that people with disabilities can get in the door.” It seems simple, and of course if your child was in a wheelchair, a doctor would help you get your child to an entrance with a ramp so she could access care. PDA is an invisible disability, but that does not negate the neuro-biological differences that make it challenging for your child to “get through the door.”
Based on these principles, you should be able to, at the very least, discuss virtual appointments, home visits, sending pictures of the room and doctor to reduce anxiety of the child for an initial appointment, or meeting the doctor at an entrance to the clinic or hospital where there are less people and potential for sensory overwhelm. Or, for example, if your child refuses to wear a mask or cannot do so due to sensory issues, this is something you should be able to discuss with a provider. You are not being “high maintenance” or “annoying,” you are advocating for reasonable accommodations for your child.
You are allowed to advocate.
We know that when you are exhausted, gaslit, or simply misunderstood, the last thing you feel like doing is “educating” a doctor about your child’s brain-wiring. That’s OK. Sometimes it is enough just to get through the day, and back into bed at the end, without putting anything additional on your plate. We have certainly been there. If you do, however, feel that you have enough energy to advocate, we wanted to provide you with an easy starting point. Specifically, if your child has already gotten an ASD diagnosis, but you were not provided information about PDA or alternatives to ABA-therapy, we have a template letter that you can send to that clinic or doctor’s office. (It is attached below). Hopefully this will start to plant more seeds of awareness, in a grassroots sort of way. Feel free to adjust and edit as you see fit.
What is your advice about working with medical professionals with a PDA child?
Please share recommendations, experience, or advice in the comment section! Also feel free to send us your anonymized templates to share with other parents.